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Letters From Our Readers – Name Change Debate 2-14-07

  [ 219 votes ]   [ Discuss This Article ] • February 14, 2007

What About the ICD-9-CM Codes?

I appreciate very much your work in re-working the diagnosis and understanding of CFS. As someone who has struggled with disabling CSF with immune dysfunction, severe atopic allergies, Fibromyalgia, chemical sensitivity, environmental illness, etc… the question is whether this diagnosis would be picked up by those who assign codes (ICD-9-CM), then by Medicare, which determines what insurance will pay for, and, ultimately, by Social Security Disability, which determines what is considered officially disabling.

Any thoughts on the political climate surrounding the new diagnosis, and what would have to happen for it to be included in the above? – Elizabeth

Note: Two excellent questions. (For those who may not be familiar with ICD-9-CM, it stands for International Classification of Diseases, Ninth Revision, Clinical Modification. It is the official system used to assign codes to diagnoses and procedures in the United States.) One of the reasons for leaving CFS as part of the new name is that the same ICD-9-CM code can still be used. Changes to the code do not come easily and usually take many years, but hopefully as ME/CFS gains acceptance, Myalgic Encephalopathy will be added to the code and the CFS can finally be dropped.

Political change usually only occurs when the people unite and insist upon it. Once ME/CFS is commonly accepted and used by both medical professionals and patients, the bureaucrats are more likely to jump on board.


What’s Different?

Can you please explain what is different from the name CFS/ME that I was diagnosed with years ago and the great name change to CFS/ME? I'm at a loss whether to laugh or cry. – Meryl

Note: Your confusion is understandable since you are in Australia where, like most of the world, ME/CFS has been used all along. This name change effort is focused on the U.S. – We’re just trying to catch up with the rest of the world.


What About FM?

Just a quick question, what about the people who have FM? Will it stay the same? After all, often the symptoms are a lot like CFS. – Julie

Note: The name Fibromyalgia will not change. Although the two illnesses have many similar symptoms, research is showing them to be distinctly different. It’s important to note, however, that it’s not unusual for someone to have both FM and ME/CFS.


A Real Winner

The new name, ME/CFS, is a real winner… It is diagnostically accurate, and yet it continues to include the recognized term, CFS, at least for the time being. I hope eventually the CFS part will be dropped, thereby simplifying the name and leaving the offending term behind forever. – Pearl


Leave Well Enough Alone

Why not leave it the way it is? It's already known by these letters and [people] know what they mean. Don't change what isn't broken… Work on something that’s going to help and that is not a name change. – Concetta


Keep ME for ‘Medical Examiner’

I would like to comment on the name change of CFS to ME. I personally felt that CFIDS was a better name. I agree there are problems with it – but in my opinion there is absolutely nothing you could have come up with that would be more damaging than to label all of us who deal with this illness and the problems with acceptance of us having the illness than to call it ME. Too many people already think that a person only has this because they are only thinking of themselves - that if they would think of others they would immediately be well… In essence you are saying this illness is “all about me!” I'm sure you can all come up with something far, far better than that. Please, please rethink this. Let's just leave ME for the Medical Examiners. – Wendy


Good News – Yay!

Thank you from the bottom of my heart for updating us on such good news. Name change, Yay! – Jazzie


En-cef-ah What?

How do you pronounce it? …That's a mouthful! But I do think it's much more clinical than CFS for sure. It makes people realize you've got something. They wouldn't just roll their eyes, look bored and change the subject. I vote YES!


Alert the Media

Great news! Please, will someone see that this information is given to all major news sources? – Sharon

Note: As you read this, the press release is being prepared.


New Name Still Minimizes the Severity

I think the new name is just as horrible and demeaning as CFS, and perhaps worse. Being labeled that you have nervous system pathology with associated muscle pain is not going to be well understood by other professionals and especially not with lay people. To me, it once again minimizes the condition and severity of problems. To me, this does not communicate how CFS is a multi-system disorder… – Barb


A Baby Step

Seems like an OK baby step, but still omits the metabolic, immune and endocrine dysfunctions that contribute a lot to the debilitating and intractable nature of this illness. – Jan


Now I Can Say What’s Wrong With Me

Thank you so much for your work on this name change! Congratulations to the Task Force on reaching a consensus! This new name - Myalgic Encephalopathy - is a huge improvement, capturing the neurological and muscular abnormalities, even though it leaves out the immunological and endocrine abnormalities.

For years, I have usually evaded the question. "What's wrong with you anyway?" because "chronic fatigue syndrome" sounds like such an idiotic answer. Immune and endocrine problems loom large for me - along with the neurological ones. But at least now I have a reasonably short answer to that question: "Myalgic Encephalopathy, with adrenal insufficiency, immune deficiency and autoimmune disorders."

Hopefully, people strong enough to live normal lives will now stop telling us “they are tired too." More important, maybe more money will now be allocated for research, now that the disease has a name that doesn't invite ridicule. (I mean really, who isn't "fatigued"?) – Kathleen

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